Time Warp

A girl in her early teens was sitting with her mother. One of the nurse educators stopped to talk with them. The mother pulled out a thick file of records. The girl, bright-eyed, beautiful, and cheerful a few moments earlier, looked away, her eyes focusing on something that was not quite the row of ADA beanie babies on the receptionist’s desk, not quite the closed door of the billing office – not quite anywhere.

The nurse first propped her hip on the arm of a chair and then settled in to it, taking the records and glancing over them. The girl’s eyes, unseen by her mother or the nurse, glazed for a moment with tears and then settled on nowhere again. The mother and nurse discussed: yes, on this day I think she miscalculated the carbs at lunch. She’s having some trouble remembering to decrease her basal when she has track practice. She, she, she. She, sitting there, gazing intently at the spots on the carpet.

I wanted so badly to go over to that girl, to say. You have a name. You have a voice. You are not she. This is your body and these are your decisions, and you, you have a voice. You are not a science experiement, a lab rat who can be discussed in the third person.

And then the nurse came to the door, only twenty minutes late this time*, and called my name, and in I went. I tried to catch her eye as I left, to let her know that someone saw her but her eyes stayed down, examining the tips of her glittery fingernails. Hers, and only hers.

Then sitting in my own nurse’s office, staring at my own bitten, lancet-pocked fingertips, discussing once again how the only thing standing between me and a 4.0 gpa, I mean a 6.0 AIC, which for the record, I am nowhere near, is my own mind and my complicated relationship with food**, I thought of her again. And wished I had stopped, touched her arm, said – said – what could I should I have said? Something.

*This is a new record in promptness for McClinic, which may start with a J.
** I know I semi-unconciously underestimate my portions to avoid lows, which will require me to eat more, and to avoid the shame that I associate with over-eating and gaining weight. I know that. But I can’t seem to change it. And I don’t understand why the nurses and doctors at McClinic insist on fiddling with my carb ratios in such silly increments. 12 grams of carbs is one spoon more of rice than 10 grams of carbs. Unless you eat all your meals out of a box with the nutrition information on the side, how will you ever know whether it’s 12 grams or 10?

Like this:

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McClinic (I believe we may see the same McDoctor) is notorious for leaving me sitting in that taupe colored waiting room for sometimes 2 hours.

I’ve seen the kids sitting under the wings of their parents, their mother fervently filling out the record books with two different colored pens so it looks like the log was updated daily instead of fifteen minutes before the appointment.

I used to be that kid, all opinions voiced by my well-intentioned mother, until the visit when I was about 13 and I asked my mother to sit in the waiting room instead of coming in with me.

Had a stranger told me they noticed my downcast eyes and fidgeting fingers, I may have asked sooner.

I’ve started to bite my tongue (hard, sometimes) and allow Olivia to speak for herself. To the endo’s credit (I believe we go to the same McClinic that starts with a J, if it’s the same one Kerri goes to), she always talks directly TO Olivia and only talks to me if there’s something going on that Olivia can’t explain. The CDE doesn’t do this as well and Olivia doesn’t really like the woman, but that’s who works with her endo, so we’re sort of stuck.

Since attending CBC for the last three summers, Olivia has become much more interested in her D care. It’s fantastic and scary, all at the same time.

Ah, the judgemental CDE. Or endo. Or nutritionist. Or nurse. Many of them are. Who *hasn’t* dealt with them?

Here’s what you can say the next time someone questions why your blood sugars are what they are:

“This is the way I eat. I need you, as my medical professional, to help me figure out how to better match my insulin levels to what I eat. Help me go on a pump if that’s what I need. Tell me how the extended bolus works so I can handle fattier foods. Tell me what the difference would be in say, a one-hour extended bolus and a four-hour one. Tell me if I need to test every two hours or more after a meal to see how my body handles carbs and fats.

“Or give me a recommendation to a shrink or a CDE or someone who knows both Type 1 diabetes and women’s issues and can give me some insight, because I have eating and weight issues that could use some help so I won’t think I’m gaining weight as a tradeoff for better blood sugars. Help me figure out how exercise can fit into the weight loss/blood sugar regulation picture.

“But don’t just talk in a patronizing tone, because frankly, I need medical advice here that I can use and that will work for me. For God’s sakes, that’s what I and my insurance are paying you for.”

Let us know what happens! And if the medical profs don’t like you speaking up for yourself, find better ones. They’re out there.

Kerri – I don’t think it’s the exact same McClinic, since I live about six hours away from you guys. But they have the same name and the same McTaupe Walls and the same Super Sized McWaits.

Julia, no S: I can’t imagine how hard it must be to parent a child with diabetes. I think the greatest gift you can give Olivia is your confidence in her – even when she makes mistakes, and she will – and the conviction that you’ll always love her no matter what her blood sugar is. And I do think biting your tongue and allowing her to take ownership of her own diabetes, no matter how hard it is for you, will be worth it in the end.

I’m glad that camp has been good for her – I never wanted to go to a diabetes camp – I just wanted to be “normal.” And while I LOVED my summer camp, I wonder if I’d have had an easier time if I had gone.

Lyrehca –

My CDE is actually pretty good. My frustration is more with myself – that despite sending several therapists on very nice vacations – I can’t seem to get a handle on these issues. I am seriously thinking about a pump… so I may be throwing myself on the wisdom of the OC for help with that decision. Oh, and I guess I am irritated by the carb ratios.

Julia S. –

Thanks so much for stopping by! As to the question, when do you realize your body is your own, for better or worse? I was diagnosed at age 10, and I very quickly came to feel like I was some sort of stage for my parents to show the doctors how good they were at managing me. But diabetes doesn’t always make sense, and invariably, I was the loose part gumming up the works. So, I agree with Kerri. And I wish I’d stopped to say something, even if I just got a teenage eye roll for my trouble.